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Anyone riding with heart issues on here?

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How has the mechanical valve caused your TIA/Strokes

Because I wouldn’t need the blood thinners with a biological valve.

Sorry to hear this @jamj1974

I was just trying to get some context on how long you've had your valve for and how the INR testing has gone. I've read some people or fine but other struggle to get consistent readings and that levels are all over the place.

I've opted for a mechanical valve which the surgeon said was the right thing to do due to my age. I really don't fancy more than one OHS either.

Had a letter through yesterday for a CAT scan, I think they are going to pump a dye into my veins and look for any other issues before pre op.


 
Posted : 20/04/2022 10:02 am
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Sounds to me as if you're doing all you can to control your INR Jamj, maybe a specialist could shed some light on it? Although I guess you've tried the usual channels.........

Because I wouldn’t need the blood thinners with a biological valve

Expanding on this, I'm assuming that the theory is that there's a greater risk of blood clots forming on a mechanical valve, hence the need for warfarin, but if the blood clotting levels aren't controlled (INR variable), then the clots form and lead to a TIA or a stroke. (I guess there are other factors, such as cholesterol that can cause strokes, I don't know if they can pinpint where the clots come from.)


 
Posted : 20/04/2022 10:34 am
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My cholesterol is low and my blood vessel’s impressively clear. There is no narrowing and plaque. As someone who has suffered a stroke they proactively put me on a statin anyway.


 
Posted : 21/04/2022 3:31 pm
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My wife’s side of the family have a genetic disorder that has led to most of them having this condition and to be blunt, it has killed 80% of them (aunts, uncles, grandparents etc before anyone properly cottoned on and now my wife, bother, sister, my boy, my SiLs daughter etc are all scanned regularly to monitor any enlargement of the aorta.

My MiL was spotted in time and had surgery and made a full recovery no problems though.

Given that if your aorta does go you’re ****ed I’d err on the side of caution…


 
Posted : 21/04/2022 5:31 pm
 ton
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i am fortunate enough to be able to add a little bit of joy to the sadness of this thread. just got home from LGI Jubilee wing.
rest heart rate of 62bpm now. with a perfect BP for a 55 year old man and my heart is now back in sinus rhythm. so fingers crossed for a good future.
the NHS are bloody amazing.

good luck for the future renton, and all you other blokes with heart issues.
i wish you all a good outcome.


 
Posted : 21/04/2022 5:55 pm
 Rona
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Great news ton.

My very best wishes to all on this thread. It's scary to have a heart issue. I'm a member of the Zip Club too (love that!). For me it was a congenital plumbing issue – some abnormal cardiac geography! – which didn't become apparent until I was in my late 30s. I think my first question to the surgeon was: will I still be able to ride my bike? The answer for me was yes, and I've been very grateful for that. Yes, a massive thumbs up for the NHS.


 
Posted : 21/04/2022 9:02 pm
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That's great news Ton.

It's 9 years ago this week that Kevin last had any AF issues. The life style changes he made then and kept to have worked for him. We still keep fingers crossed that he won't need any of the procedures he was offered at the time and assume that the success rate must be getting better as each year goes by.

He uses the Turbo Levo more than his Stumpy now but still hitting the trails as hard, fast and often. If he had listened to the Consultant then he would have had to pack in MTBing forever.

Only tablets he is on now are Statins.


 
Posted : 21/04/2022 9:37 pm
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👍glad to hear that @ton


 
Posted : 21/04/2022 11:17 pm
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Thanks for the kind wishes all.


 
Posted : 22/04/2022 8:59 pm
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Not wishing to prompt any hoarding/panic prescribing of meds, but Channel 4 news last night had a report on medication shortages (most noticeable with HRT) and mentioned a UK shortage of warfarin. I always have a buffer of a months worth before restocking, not the sort of meds you'd want to be going without...........


 
Posted : 26/04/2022 1:34 pm
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good luck for the future renton, and all you other blokes with heart issues.
i wish you all a good outcome.

Thats excellent news Ton.

Thanks for the kind words too, I will keep everyone updated on progress etc. Currently booked in for a CAT scan on Thursday where they are going to inject some dye into my veins to look for any other issues.


 
Posted : 26/04/2022 3:40 pm
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Just had some letters in the post!!

Pre Op assessment : 26th May.

Operation : 23rd June.

"Shit" as they say is getting real !!


 
Posted : 29/04/2022 4:50 pm
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Just seen your post @Ton that is great news! Glad it all went well.
I'm about 10 months into my AF journey, 7 months in permanent AF, the last 3 in normal rhythm due to an ablation and the strong Amiodarone meds I'm currently on. At the end of next month the meds should stop and then we will see what happens, will I stick or twist??!

Last couple of months have been great to exercise again, mostly on the turbo but the strength is returning and the HR is staying low. I love being back on the bike.

Fingers crossed for you all, all the best Renton on the upcoming Op! Take care!


 
Posted : 29/04/2022 5:02 pm
 gray
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How are you doing @ton? Hope all continues to be well. Also for the rest of you!


 
Posted : 06/05/2022 9:26 pm
 ton
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@gray

i am doing very well mate. 2 weeks in synus now, fingers crossed it shall carry on.

hope everyone else is going well and i hope you all get sorted.
it is pretty horrible when you are a active person, who is then stopped from being so by illness.


 
Posted : 06/05/2022 10:24 pm
 gray
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That's ace, well done!


 
Posted : 06/05/2022 10:32 pm
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Good news ton.
Renton
Hope it all goes well.
Having been forced off the bike for a long period of time I really feel for anyone in the same situation.


 
Posted : 06/05/2022 10:39 pm
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Great news Ton. Best of luck Renton. Keep us updated!


 
Posted : 06/05/2022 11:11 pm
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Good luck to all you guys dealing with heart conditions.
As someone who's wife has been through all this and more, I'd just like to give a shout out to all your partners, family and friends.


 
Posted : 07/05/2022 10:43 am
 ton
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how quickly things can change, mostly for the worse.
i reverted back into AF yesterday morning. in a bad way.
heart rate of 150 bpm, quickly followed by a drop to 40 bpm where it stayed until 3am this morning.
spent the day and night in LGI ccu.
just got home, with the news that i may now have to live with AF. i have had too much work done in the past to try any ablations, and a cardioversion seems a bit pointless as my heart will revert.
possibly node ablation with a pacemaker fitted, but i am a bit too young for this.
so we will see.
back to 10mph rides eh.......... ;o)


 
Posted : 08/05/2022 8:11 pm
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i am a bit too young for this

Who are you trying to fool?


 
Posted : 08/05/2022 8:37 pm
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Thread update:

Well, my operation date of 23rd June was cancelled due to a couple of emergencies which is to be expected.

I then had to go and see the surgeon as my breathlessness is getting worse and I am also getting more swelling on my legs despite being on water tablets. Currently I feel constantly tired and recovery from exercise is taking a lot longer.

Anyway I'm due to go into hospital on Wednesday with a view to doing the surgery on Thursday. About 3-4 months off the bike follows that and then I can start doing some light riding. Hoping to be able to throw my bike around properly by the end of the year. This is providing surgery and recovery goes well.

I'll keep you all updated.

Cheers


 
Posted : 01/07/2022 1:48 pm
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Good luck, hope the procedure goes smoothly and you bounce back quickly.


 
Posted : 01/07/2022 1:53 pm
 ton
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good luck with it all pal. soon be back on the bike.
i have just got in from a 10mph ride with the wife and eldest.
ride slow, ride far.

good luck.


 
Posted : 01/07/2022 3:00 pm
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Hi all. Update time.

Surgery went as expected on Thursday and lasted about 6 hours. I had a metallic aortic valve and ascending aortic root replacement. Both bits went fine.

Currently feeling like Ive been hit by a bus or two which is to be expected.

Unfortunately I'm still in critical care as my heart has now decided not to talk to itself which means I have no regular heart rhythm. They are currently exploring the option of a permanent pacemaker which is fine.

Hospital and all nurses and doctors have been absolutely amazing.

Feeling quite emotional today on day four after the op.


 
Posted : 11/07/2022 5:36 pm
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Hope you have a good recovery. Don't underestimate the emotional toll of the lead up to it and the surgery, so take it easy on yourself.


 
Posted : 11/07/2022 5:42 pm
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Heal up soon. If you do end up needing a pacemaker, it should be a piece of cake compared to the major major re-plumbing you've just had done!


 
Posted : 11/07/2022 5:45 pm
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Fingers crossed for you Renton, I hope the rhythm sorts itself out and you get as near to normal as you can.

I missed the update from @Ton, sorry to hear that mate, bloody AF is a real pain and so restrictive with the exercise. Have they mentioned any other meds you could try?
I'm 2 months off the Amiodarone and all going well currently, back to biking pretty normally but still building back up, a week of covid didn't help. The Amiodarone stays in my system for 3 months so I should know the outcome after August.
Wishing you all the best with the various issues!


 
Posted : 11/07/2022 5:47 pm
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I am riding with "basstorinic" and "nixie" but I think "heart issues" has left the forum in a flounce


 
Posted : 12/07/2022 8:20 am
 Rona
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Hi renton – hope you're recovering well, and hope you get your rhythm issues sorted. As longdog said ... I found the emotional recovery far more of an issue than the physical recovery after heart surgery. Wishing you well.


 
Posted : 14/07/2022 8:06 am
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Good luck Renton.
Do you clank like what I do ?
(Mine has quietened over the last 40 years, I think. That or I've got used to it.)


 
Posted : 14/07/2022 8:24 am
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Surgery went as expected on Thursday and lasted about 6 hours. I had a metallic aortic valve and ascending aortic root replacement. Both bits went fine.

Serious plumbing!

Best of luck with the recovery. Have a friend with a replacement valve, hasn't stopped him being disgustingly fit - represented the UK in cycling at Masters world champs.


 
Posted : 14/07/2022 12:09 pm
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Hi all,

Further update time ..... Managed to somehow pick up an infection and have felt extremely poorly over the last two days. Even managed to upset the wife last night and have no recollection of it?

As it stands my heart is repaired but is now no longer communicatijg between the different parts. This in turn means i am going to need a pacemaker over the next couple of days once I've got rid of the infection I have.

All a bit emotional really.


 
Posted : 14/07/2022 6:13 pm
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Hi Renton, glad to hear that the surgery went OK, hope the infection clears up and the pacemaker sorts out the rhythm issues. Have you got used to the noises yet (thump, thump, click, click) ??


 
Posted : 15/07/2022 1:40 pm
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I have been riding weekly and more with my son - until his a broken wrist injury got in his way.

I have had a massive headache for a week - a migraine not a headache, with headache huge balance and nausea issues.


 
Posted : 15/07/2022 5:58 pm
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Have you got used to the noises yet (thump, thump, click, click) ??

Nope. It's still freaking me out how loud it is !!

I feel it tick at the bottom of my throat more than anywhere else which is weird 😃


 
Posted : 15/07/2022 8:16 pm
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bottom of my throat

that bits weird isn't it? For me, the throat thing only lasted about a week or so but it sometimes come back.


 
Posted : 15/07/2022 9:27 pm
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The noise of the valve took a long time getter used to - perhaps 3?ears in my case..


 
Posted : 16/07/2022 3:10 am
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The noise of the valve took a long time getter used to – perhaps 3?ears in my case..

Christ on a bike I hope it doesn't take that long 😅


 
Posted : 16/07/2022 11:30 am
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Alright everyone, update time.

I'm now 5 weeks post op and started back at work today. Its been quite an eventful few weeks that has seen me amazed at how well the body can recover from some serious surgery.

AS I mentioned I had to have a permanent pacemaker fitted and have an appointment at the end of the month to have the settings reviewed, currently my HR is all over the place and my resting heart rate seems to be about 10-15 bpm higher than pre surgery. I'm also hitting high bpm around 145 just walking up a steep incline. Apparently as you start building fitness again it will improve.

I've dropped a stone and half in weight since leaving hospital and haven't really been watching what I eat as the surgeon said your body will consume lots of calories repairing itself so eat what I want for 8 weeks then look at the Mediterranean diet.

I have my first cardiac rehab session Thursday to hopefully stat building up my stamina and strength again and my goal is to be fit enough to ride my bike again at the 12 week post surgery point.

I hope everyone else is doing ok at the moment !!


 
Posted : 16/08/2022 6:53 pm
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Excellent news 😁 Hope the recovery keeps going so well!


 
Posted : 16/08/2022 7:32 pm
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Renton, so glad to hear you are post op and on the mend. Even with the complications it feels that you are are through the woods, and you've given me a big uplift being back at work in 5 weeks.

I'm still a bit off the op yet as still pretty active, but it still plays on my mind and your update has calmed me in one way but sensibly made me aware that the op might then lead to further challenges.

Let me know how the exercise recovery goes. So pleased for you fella.


 
Posted : 16/08/2022 7:43 pm
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Glad to hear thing are going well, I'd take it steady going back to work so soon....


 
Posted : 16/08/2022 9:15 pm
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@natrix I’m working from home sat at a computer doing half days this week so relatively easy. I’ve got an appointment with the dr on Friday to clear me to drive and then hopefully start full time next week.


 
Posted : 16/08/2022 9:59 pm
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Alright all,

Im now 8 weeks post surgery and have been doing cardiac rehab twice a week. It all seems to be going ok but at high heart rates I was getting quite breathless. I mentioned this to the cardiac physio and she asked me about my pacemaker settings. Told her I had no idea what it was set too but that I have an appointment coming up soon so would ask.

It turns out that they had set my pacemaker to give me help up until a max heart rate of 130bpm so anything above that and my heart was trying to do it on its own. As my heart isn't beating on its own correctly this explained why I was getting quite breathy. They have now set it to give me 160bpm and said if I needed it higher they can quickly adjust it. Pre op my heart rate never got above 155 anyway and at age 46 its not far off max heart rate now anyway.

It also turns out that since surgery I've had a few bouts of Atrial Fibrillation with the last one being 07 august. Apparently quite common after OHS and the pacemaker nurse didn't seem concerned. Next check up scheduled for 18 months time.

My INR levels seem to have settled now too. I'm sat at 2.0 which is perfect for my On-X valve. Hopefully they are going to extend the testing frequency out now.

Ive a meeting with the surgeon on the 20th and hopefully will get the all clear to start riding again. The physio said no reason why I cant ride now but having tried to do a light press up and having a bit of pain Ive decided to wait and see what the surgeon says.


 
Posted : 02/09/2022 12:47 pm
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